What’s the Problem Represented to Be? Autism, School and Policy Musing

Filed Under (Government Services, Human Rights, Inclusion, Institutionalization, Policy, school, Single Parenthood) by Estee on 22-04-2015

As Adam school closes, we have our Plan B which does involve his acceptance into a high school language arts community in a school devoted to social justice. Adam is in grade seven but will jump a grade. Some might say this is Ironic, no, for a child who some therapists said couldn’t understand, let alone speak fluently? But it won’t all be in school. In thinking about the schools, policies and systems that are currently in place for autistic people in Canada, I came across the following:

“Heidegger says we are accustomed to having conditions given so that we can plan out definite results. We are used to being able to plan, to calculate, and when we cannot do so, we feel out of our depth…” I fell onto this while reading “Our Dissertations, Ourselves” (2014) but it has another meaning for me. I have promised Adam (and myself) that I would never put Adam into an institutionalized setting/school or group home. The IBI program that I strongly critique is anchored in calculations and definite results or outcomes, even when they are built on false promises because of false assumptions/premises. We want to depend on others to much of this for us… to solve a “problem.” In this, I like what Carol Bacchi asks “What is the problem represented to be?”

This is the core of how systems and autism policies are built.

I think of it this way, we really shouldn’t launch into parent-hood without recognizing that no matter who the child will be, there will be challenges, systemic and otherwise. The neoliberal system also in which we all live works against children by suggesting that everyone can work (and this is also disguised as fulfillment and leisure which often creates a tension with domestic work). I admit I resent this tension. Parenthood requires all of me. It requires that I work outside of existing conditions neither serve Adam nor our values. It is not easy to work outside of systems, or meander in and out of them as we see fit. But right now, we feel it’s necessary.

Reference:

Christine Sorrell Dinkins and Jeanne Merkle Sorrell (2014), Our Dissertations, Ourselves: Shared Stories of Women’s Dissertation Journeys. Palgrave Macmillan

Save The Merle Levine Academy

Filed Under (school) by Estee on 20-04-2015

I rarely write a piece to save my son’s school, so hear me out:

Due to dwindling enrollment, the Merle Levine Academy (MLA) is shutting its doors – unless more students attend. For autism and other learning disabilities, MLA has graduated students and 90% have gone off to college and university. The school has allowed myself and Adam’s super team to assist and support him where needed and Adam is also included into the classroom. In the past 2 years, Adam has become a speedy typist, communicates his feelings, writes essays, talks with his friends by typing, is above grade in language arts and studies grade-level academics. All he needed was this opportunity. These are some of the most important gifts that MLA has enabled. The other is the priceless smile and pride that Adam wears on his sleeve.

When math was tricky to learn to teach, his teacher stuck with it and now Adam finishes his own math sheets and learns practical math. MLA is not specifically an autism school – there are many different kinds of learners there. In fact, of the schools available for kids like my son who are non-speaking with lots of challenges, there are basically none except for the ABA (or IBI) autism school here in Ontario. When it comes to the public schools, Adam would have been relegated to the lowest functioning class and given IBI as a treatment of intervention. Of the schools that do say they accept autistic children, they usually are the cherry-picking kind, preferring the ones who fit neatly into the class structure; in other words, less costly to manage.

It is ironic that MLA, once a school where kids were farmed if they couldn’t do school, has become the closest to an all-inclusive one (although I wish to be diligent here that we need to produce more schools with the principles of diversity and social justice/egalitarianism. These would educate all children with an enriched disability studies curriculum where teachers learn to teach courses on deaf sign language, autism sensory experience, and so on. At the moment, our imagining of autism or special needs and education seems to be located in the margins of real education which must be changed).

The Applied Behavioural Therapy that has now anchored itself as the treatment of choice has become government-sanctioned segregation. As I predicted in 2005 on my Joy of Autism blog, parents now have little choice where children are to be managed rather than educated. As there is no inclusion because the government only funds ABA treatment here in Ontario – this is based on the principle that people must be remediated before the right to inclusion – parents feel compelled to go where their kids receive funding with the promise to normalize for the purposes of inclusion. To move outside of that framework requires substantial parental time and other resources. What I have learned in the past 13 years is that parents who have learned that autism schools will never provide all the answers, and no one person will solve all your perceived problems, that MLA will stick with you to make it work for your child. As I wish to follow what our Canadian legislation mandates, which is access and inclusion no matter what the disability, I follow this social justice principle rather than paying lip-service to it. For us, our entry into MLA was the chance that I was waiting for, and that has clearly benefited Adam.

I’m doing my bit here to possibly save the school that gives kids the opportunity to learn about the world they want to learn about, while allowing for the other accommodations that children need. I know that all of us want our children to feel great about themselves, to be happy and most of all, to feel accepted as they are. I know there are kids who wanted to graduate high school at MLA next year after having invested so much time. Please consider helping these kids and this school. I feel MLA has given us the chance to know that this set-up works. What many parents want for children is choice and opportunity. My choice for Adam, and Adam’s own choice, has never been segregation. It has been education, inclusion, and acceptance for being autistic… all the way!

If you want to give it a chance or offer your support please contact: Telephone: 416-661-4141 Email: merle@merlelevineacademy.com

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.